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Thursday, April 23, 2015

What Does SPD Mean To Me?

After reading The Out of Sync Child and realizing sensory processing disorder (SPD) describes my Ladybug far better than any autism spectrum disorder, I mentioned to her pediatrician that if SPD is real, she has it. And she asked me what that meant to me.

That is an excellent question. I either think I am crazy, over-diagnosing completely normal childish behaviors, or I feel like no one else has any idea what my life is really like.

So for me, SPD means...

As my child gets older, she requires more effort and attention, not less. She gets physically and mentally harder to parent, not easier. I look back at nights of colic and think, that was easier.

Any mistake costs me time. A cabinet not latched. The kitchen not blocked off. A jar not put away. And typically, it doesn't cost me a few minutes. It often costs upwards of 30 minutes, sometimes more, by the time I clean both the child and the surroundings, in addition to the cost of the item wasted. There is NO room for error.

I must weigh the need to go to the bathroom or anything that takes me out of sight of the kids against the risk of finding mayhem when I return. This means simple things, like showers, toileting, personal hygiene and maintenance, must either happen at 6am or it doesn't happen at all.

Every event, every day, is approached with "how will she cope with this?" Meltdowns are more likely after social events. I decide whether or not the benefit outweighs the possible consequences. Changes in plan are often accompanied by screams and resistance. She may appear very placid in public, but when we return home, the windows may rattle as she apparently simply can't cope with anything else.

I am to the point of deciding my time would be better managed by devoting myself 100% to my children during their waking hours, rather than trying to get anything accomplished around the house. Because if my attention is elsewhere, she is likely causing mayhem that will take even longer to repair.

I am continually running on empty. I am mentally exhausted. I am constantly trying to come up with things for her to do, ways to stimulate her senses and meet her seemingly unquenchable desires. Ways of handling her meltdowns. Forms of discipline and training that will work.

I struggle with hope. Because things are getting harder. I look forward to her being in school. But I wonder if I will need to home school, and how in the world will I do that? Every time I've thought things are getting better, they've stopped improving. And I try to focus on what has gotten better. Such as, she is no longer obsessed over closing doors. Yet what has that been replaced by? Painting herself in oatmeal & Nutella. Can we go back to the door closing?

I feel guilty. Because I'm living the life of which I dreamed. And yet... I can't wait for bedtime. I want to enjoy my children. I reach the end of the day and my creativity and patience are long gone. I feel foolish for having so many children in so few years. I could never have known what it'd be like, and I wouldn't trade any of them, but I still sometimes feel guilty for putting them through a childhood like this.

This is part of why I have started making extra effort to get pictures of the grins that come when she's enjoying something. Because I need that visible reminder that something I'm doing is working. That I'm not making her miserable all the time. And I take pictures of the messes, because as much as I'd like to forget them sometimes, I want to remember so that when my children are grown and I see a mom struggling, I will remember that these years that are supposedly awesome can be really tough.

And I am aware that every child has their own unique challenges. Just about all kids get into things. Many kids enjoy getting dirty. Most kids pitch fits. And 3 is a tough age. Each individual thing depicted in the pictures above, for example, is not what bothers me. It's all of it together. It's the daily, multiple times a day, stuff that exhausts me. Perhaps, in another year, I'll say to myself "you really were nuts. She's grown out of all that and is a completely normal kid and you over-reacted." But in the meantime, if using techniques created for kids with issues helps, then I'm going to read those books and use those ideas.